Hi all,
Haven't been on in quite a while. I have not been feeling that great and started having shortness of breath. There was some confusion with my neurologist moving to a new hospital and as a result I had not seen him since Oct. 09.

Well I went to the ER and eventually caught up with my neuro. I had tapered down prednisone and took my last pill on Jan.13/10. I am not wanting to go on pred again if I can avoid it. I got to the ER Friday afternoon Feb. 5th and did not get to see my neuro until Mon. afternoon Feb. 8th. During the weekend I saw several internal medicine doctors and a few general neurologists. All of them wanted to start me on a high dose of pred right away.

I held my ground and refused. I said I am in the hospital, my breathing and condition is being monitored constantly. I also said that I wanted to wait to speak to my neuromuscular neurologist to see what his plan would be. This could be the reason I was left in the ER from Fri afternoon until Sunday evening before I was moved to a room.

When I did see my neuro he felt that a regular schedule of IVIG treatments was a fair plan considering I did not want to go back on the pred. While in hospital I had a two day IVIG treatment and I will receive that every four weeks now.

I am wondering for those of you who receive regular treatments, how did your dr decide on the length of time between treatments?

Thanks for listening to my long post. Take care ~ Melanie